"I noticed that there seems to be disagreement from
persons on this list who only want conventional
treatment and those persons who are willing to seek
alternative treatments. Is there a place for both”?
This was a question asked recently on one of the discussion groups, and
it deserves an honest answer. Almost every day somebody asks a question
about alternative treatments: ‘Can I take this or that’, ‘I’ve heard
that xyz is good for the immune system’. The answers often come as a
surprise to the questioner, and can lead to some
ruffled feathers. I thought I had better explain why we, the MM
community are a little cautious about taking some supplements, herbs or
alternate treatments.
First, a little background information. Multiple Myeloma is a cancer of
the plasma cells in the blood, sometimes called a plasma cell
dyscrasia. In myeloma, an over production of plasma cells tends to
crowd out the bone marrow, making it difficult for the marrow to
produce other, healthy blood cells. One of the typical signs of myeloma
is anaemia, because red blood cells are impeded or prevented from
producing normally. Multiple Myeloma causes immune system deficiencies;
however it is not always beneficial to MM patients to stimulate the
immune system and try and make up for such a deficiency, although it is
perfectly natural for the patient to want to do this.
Most OTC (over the counter) health products are divided into groups
like cold or weight-loss remedies, vitamins of every colour shape and
size, women’s preparations for combating PMT etc. You get the picture.
In winter time we are bombarded with advertisements to ‘build up our
immune systems’ to help ward off colds and flu. For 90% of the
population these preparations are fine. But for myeloma patients, we
tread a fine line of avoiding infections like colds and flu (because we
are more prone to them), and trying NOT to stimulate our immune systems
too much; it is almost impossible to know whether an overall
stimulation of the immune system might also stimulate the production of
MM cells. Most myeloma patients take something from this group, even if
it is just a vitamin or mineral.
Then we have another group of products which make beneficial claims for
anything from helping you sleep better to curing cancer. This group is
the most dangerous, and for some reason attracts the most attention.
The products range from lolly-water to quite dangerous foreign herbs to
outright poisons. The lolly-water type of product is usually a ‘juice’
from an exotic fruit or plant. It won’t do you any harm, might do some
good, but high levels of sugar may cause serum glucose problems. The
herbs ‘can’ be very dangerous. An example is some ‘traditional’ South
East Asian preparations. They can contain alarmingly high
concentrations of lead and other poisons. The herb, seed, root or
whatever is not in itself dangerous, but the conditions under which it
has been grown are. The packaged product ends up being toxic simply
because of high concentrations of toxins in the soil where it was
grown. You, the consumer won’t know this, because the products seldom
say where they come from (and certainly not in English). Some recent
examples I have seen include traditional Indian preparations that have
been found to contain high levels of lead and cadmium (because of the
area in which they have been grown), and Chinese ‘traditional’ weight
loss products, and erectile dysfunction preparations. Both were found
to contain dangerous levels of stimulants and appetite suppressants,
but the packaging was unintelligible unless you spoke Cantonese.
The problem with this group is, if you don’t know what the ingredients
are, you could take something that was harmful or contraindicated in MM
and if you DO know what the ingredients are, you probably don’t know
where they came from or how they were harvested, stored and graded.
There is another group of alternative medicines that don’t fall into
the scam basket, or the downright dangerous one. These are perfectly
legitimate products like quark, flax seed oil, curcumin, bioperine,
coffee treatments, in fact a long, long list. There are many supporters
of this group of products, and some people claim to have had very
beneficial effects. Some supplements are being laboratory tested, like
curcumin; no data is available as yet. I personally have not tried
anything from this group, and so I can’t really comment.
There is hope that somewhere, sometime, something simple like flax seed
oil, or curcumin will prove beneficial to MM. At the moment, as always,
check with your doctor before taking off on a diet or regimen.
There are some supplements and food that should be avoided under
‘certain’ circumstances. An example is: you have been prescribed a
blood thinner (anticoagulant) like warfarin. Somebody tells you that
lots of vitamin K is good for you. Vitamin K is a natural blood thinner
and is found in green leafy veggies like kale, spinach etc. You
suddenly up your intake of green leafy vegetables far higher than you
normally take, or indeed what you told your doctor you eat. Doses of
drugs like warfarin are ‘tailored’ to what you normally do/eat. The
sudden increase of veggies can cause an excess of blood thinner (which
your doctor didn’t know about :)) End result is an excess of warfarin.
If you do eat a lot of green leafy veggies - tell your doctor. If you
decide to go on a special diet, ALWAYS check with the doctor first.
Alternative treatments like acupuncture, UV light, TENS units have also
been credited with some success, especially acupuncture with peripheral
neuropathy. If you
are going to investigate this type of treatment, please make sure the
treatment professional/supplier is a properly accredited, genuine
therapist. One word of caution, osteopaths and nutritionists should be
avoided, UNLESS you KNOW that they are fully up to speed with Multiple
Myeloma. Osteopaths can cause serious damage if they are not aware of
MM, and need to prove that they treat the patient without causing any
damage to the patient’s already fragile bones; similarly nutritionists
can also make matters a lot worse if they don’t understand the complex
bone resorption/blood chemistry balance.
To end, there are safe, non problematical supplements (so long as you
don’t intend to take ‘h u g e’ quantities :), and there are many health
foods out there that are absolutely fine to take some do have a
beneficial effect on MM. But as always, if you are going to seek
alternative treatment of any kind, please consult your doctor first.
Chris Hollyer
